FAQs

How many women are living with HIV?

Globally there are 16.0 million women aged 15 and over living with HIV. (World Health Organisation, 2013)[i]
An estimated 107,800 people were living with HIV in the UK in 2013. (Public Health England, 2014)[ii] A third these are women. (NAT)[iii]

The rate of HIV among black-African heterosexuals in the UK is 56 per 1,000 population aged 15-59 years. It is higher among black-African women, at 71 per 1,000. (Public Health England 2014)[iv]

Why does Sophia Forum focus on women?

Women living with HIV in the UK are more likely to face complex issues such as:

  • Gender inequality
  • Intimate partner violence
  • HIV related stigma
  • Fewer sources of social support and changes to the benefits system
  • Poor mental health
  • Barriers in accessing or maintaining treatment
  • Reproductive choices
  • Incarceration
  • Seeking asylum
  • Limited gender specific HIV research
  • Lack of HIV information for lesbian and bisexual women and trans people.
  • Few women living with HIV in leadership roles

Why is it important to look at issues facing women living with HIV separately from men?

Over half (57%) of the heterosexual women living with HIV are diagnosed with HIV later on in the progression of the disease. If your HIV infection is diagnosed late, you have a ten-fold increased risk of dying within the first year of diagnosis compared to those diagnosed early.[v]

There are thought to be around 22,000 people living with HIV in the UK who are currently undiagnosed and it is likely that there are more women among them. (HIV in the United Kingdom 2013).

Women still tend to be the main care givers for themselves, their partners and family. Thus, they need more support in accessing knowledge and skills that help them address their HIV prevention, treatment care and support related needs.

Women living with HIV are still side-lined in decision-making that concerns them e.g. the recent Public Health England consultations regarding the introduction of pre-exposure prophylaxis (PrEP) into the NHS.

Women need specific advice and support about their health, importantly around motherhood and safe delivery of children. When women living with HIV are able to have the proper care, treatment and support they have a very good chance of having children who are born HIV-free.  This is due to huge medical advances which have been made in recent years. Nevertheless women are still sometimes made to feel that having children once they are HIV positive – and even having sex – is wrong. It is not! British HIV Association Guidelines  for the management of HIV infection in pregnant women can be accessed at http://www.bhiva.org/documents/Guidelines/Pregnancy/2012/hiv1030_6.pdf

What can I do to support women living with HIV?

You have probably already met a woman living with HIV without realising it. HIV affects all people from all ethnic groups, all professions, all walks of life.

Talk with friends, colleagues or family members about HIV, to help overcome negative beliefs, attitudes and practices.

Challenge all forms of gender inequality, racism and other forms of social, economic, political and legal injustice in relation to women, what happens to their bodies and their lives. These injustices are all inter-connected and exacerbate the experience of living with HIV.

Write or suggest an article in your community or corporate newsletter about how HIV affects women in your town or sector. You can contact Sophia Forum to help with the background information for the article.

Ask for our help to invite a HIV positive woman to come and speak to your work colleagues, your faith or other community group.

Find out what your local HIV charity is doing to address women specifically. Put them in touch with Sophia Forum if they don’t know about us.

If you have no free time but would like to help by fundraising or donating money to facilitate our work you can make a donation to or take out a regular subscription, it will be most welcome! You can click here for our fundraising details. We are also part of the Aviva Community Fund competition and would appreciate your votes to help us secure funding.

Where can I get more information?

General information about HIV is available on the National AIDS Trust website at http://www.hivaware.org.uk/facts-myths/faqs-myths

Information about HIV treatment can be found at http://i-base.info/

Information for service providers is available on the British HIV Association website at http://www.bhiva.org/Guidelines.aspx

Information about women and HIV in other parts of the world can be found on the Global Forum on Women and AIDS Website at https://gcwa.unaids.org/

Sophia Forum is the UK Chapter of the Global Forum on Women and AIDS

You can also consult the Salamander Trust website, a charity established by the Sophia Forum’s co-founder and Patron Dr Alice Welbourn at http://www.salamandertrust.net

If you have any specific questions you want to ask you can contact Sophia Forum in confidence at info@sophiaforum.net and we will do our best to answer your query or direct you to a good source of information.


[i] http://www.who.int/gho/hiv/epidemic_status/cases_adults_women_children/en/

[ii] https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/401662/2014_PHE_HIV_annual_report_draft_Final_07-01-2015.pdf

[iii] http://www.hivaware.org.uk/facts-myths/hiv-statistics

[iv] https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/401662/2014_PHE_HIV_annual_report_draft_Final_07-01-2015.pdf

[v] https://publichealthmatters.blog.gov.uk/2014/12/01/leaving-it-late-why-are-people-still-dying-from-hiv-in-the-uk/